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CBD drops reduce the quantity of infantile spasms

Article by Simon Sinigoj

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How CBD affects infantile spasms

Maša is an 8-year old girl who has spent her entire young life living with so-called infantile spasms or convulsions, which first started to appear when she was a 5-month old baby. At that time she received her second vaccine and ever since then the spasms have been a part of her everyday life. As if that were not enough, her immune system collapsed and she was infected with a chickenpox virus when she was 6 months old, and soon after that she was also diagnosed with encephalitis. Since then her parents have invested tremendous efforts into improving the quality of Maša’s life, but despite all their attempts, her progress was extremely slow, if there was any progress at all to begin with. Her development came to a halt, therefore she needs constant care and attention of adults. She is unable to do anything by herself. During the day, while her parents are at work, a nanny looks after her, feeds her, changes her clothes, talks to her and works out with her. It goes without saying that caring for a child such as Maša requires a whole person, and, as Maša’s mother admits, doing all that while having a regular job is exhausting.

Spasms are the greatest difficulty

Maša’s mother explains that spasms occur several times a day. Mostly during night time or in the morning. “This happens with the majority of children who suffer from this syndrome,” she says. “The spasms start appearing sometime after 2 o’clock in the morning and then they continue to repeat until eight or nine o’clock in the morning. Sometimes there’s also one occurring during the day.”

Spasms are difficult to predict. But the mother knows that they are bound to happen if the girl wakes up: “She wakes up because there’s a spasm about to be triggered. However, we cannot predict whether it will happen in two minutes or in half an hour, but we are certain that it will happen for sure because Maša has woken up.” Ultimately that means that her sleep is disturbed and sleepless nights are not just a part of hers but also of entire family’s everyday life. There are days when everyone sleeps peacefully until 7 a.m. Those are the days when Maša’s sleep is not disturbed by spasms at night. But that only means that they are about to happen somewhat later, during the day.

The frequency of Maša’s spasms varies. “We have ups and downs,” her mother says. There are good days with only one or two spasms occurring. Then there are days with a series of up to six spasms taking place. Their duration also varies. Sometimes they are as short as some ten seconds, but sometimes they can last for over a minute. They differ greatly in their intensity, therefore they always have a different effect of exhaustion on her. Sometimes she is more tired, and sometimes less. Occasionally these spasms can be so light, they could go completely unnoticed with someone unfamiliar with this syndrome. In such cases Maša simply calms down and sits completely still for a few seconds, until the spasm is over. On the other hand, there are also situations when such powerful spasms flush over her body that she is unable to control her movements.

Countless sleepless nights have, of course, taken their toll. “The fact that she rarely sleeps undisturbed throughout the night is the reason why she is unable to make any progress whatsoever. She is constantly tired,” Maša’s mother concludes and presents a somewhat broader context: “The trouble with the spasms is that every time Maša succeeds at learning something new – either with the help of physiotherapy or some other therapies – all of that is somehow erased by spasms, keeping us at status quo all the time.”

Searching for solutions in alternative approaches

Since Maša first started experiencing impediments in her development at the age of 6 months, her parents have tried with numerous therapies. “We tried with physiotherapy provided to us by national healthcare system, as well as with occupational therapy. After that we also tried with plenty of other alternative approaches, from osteopathy to reflexology and homeopathy,” the mother explains. Up to the age of four Maša underwent some form of therapy practically every day, which summed up to as much as seven therapies a week. Sometimes her parents would take her to see various specialists abroad as well. They were all putting in maximum effort to stimulate Maša’s progress. But every time there was even a slight prospect of success, they were back at square one again. Despite all attempts there was no progress in the girl’s development. “After all we’ve tried, there should have been a turnaround in her condition, but it just can’t seem to happen. We seem to be stuck in one place more or less all the time.” Nevertheless, the mother admits, they have come to see the girl improve her attention, she looks at the family members with a slightly better focus. She has her own way of communicating with them, sometimes she even smiles at some of them. But of course her parents and her brother would wish for things to be different. They would prefer to see Maša more involved in family activities and to be able to communicate with them better.

Maša’s parents are convinced that if they could somehow stop her spasms, that would give way for some concrete progress. They believe that her condition is not permanent and irreversible, and they still have hope for improvement. The tiny steps forward that Maša has already done, nevertheless indicate that progress is possible after all. Her attention is increasing, her flexibility has also improved, she has become more confident in her movements, and she has better control of her body. Still, these small steps forward are happening very slowly.

Visible improvement after CBD therapy

Internet, which is nowadays abundant with information, led Maša’s parents to CBD products. As they were making detailed enquiries about CBD (cannabidiol), they learned that it is suitable for children as well. Maša’s father consulted a doctor at the clinic of neurology, who expressed no concerns regarding Maša consuming CBD, and so the parents commenced therapy. They started mixing the cannabinoid-containing paste with coconut oil, and administering the mixture in drops to the girl. It has been over a year since the first day of therapy and since then the parents have observed some progress. A slightly lesser in spasms, as they say, as the condition improved only by a third or a quarter. A greater improvement was recorded with Maša’s immune system which was strengthened. Winter this year had no impact on her in terms of flus or severe colds.

Maša’s parents are also noticing that the spasms do not exhaust her anymore as they did when she was younger. It is difficult to say whether this is mainly the result of CBD therapy. However, they see that since Maša started consuming cannabinoids, her spasms have become less frequent and less intense. Prior to CBD therapy, the spasms would exhaust her to such an extent that she would fall asleep after the seizure, but now this is not so much the case anymore. As her mother says, now they go about after the spasms as if nothing had happened.

The parents keep increasing the amount of drops little by little. “We’ll see where it takes us,” the mother says. “One should never give up. Somehow you have to believe that there is always something more that could be done and that things can always turn for the better. I believe that one day we will after all manage to reduce the quantity of Maša’s seizures, but if we could stop them completely, that would be amazing. This would present a much better quality of life for all of us, especially for Maša.”